James Received HSCT Free, as He Lives in the UK

Virtually all the talk about availability of HSCT1 as an MS treatment includes the need to travel long distances to other countries, but UK residents can receive the treatment in London, avoiding the journey overseas. What’s more, it is provided through the country’s social National Health Service (NHS) so, like all NHS medical care, patients are given HSCT free of charge.2

Yes, you read that right, while treatment costs worldwide seem to vary between $50,000 and $120,000, not counting travel and other incidental expenses, UK residents can get the therapy free.

James Coates has just undergone non-myeloablative HSCT (the protocol that uses lower-dose chemotherapy drugs) at King’s College Hospital, in London. In fact, today (Wednesday) he reaches 44 days since he received his stem cell transplant.

I was fortunate to be able to contact James, who lives in England’s north-west, to ask about his experiences and how he is getting along.

HSCT free

James Coates.

IF:           We hear different doctors disagreeing about HSCT. Some say it only works with Relapsing MS, others disagree. What type of MS to you have?

JC:          Secondary Progressive with an EDSS score of 6.0 to 6.5.

IF:           How long did it take from applying to receiving treatment?

JC:          After a disappointing start, it was quite quick. All applications have to be considered by a panel which, first of all, in December, turned me down as not meeting the criteria. But I appealed with the support of my neurologist and new MRI evidence. At the next panel meeting at the end of January, my application was accepted. Then, just 15 weeks later, I was in King’s where my treatment was led by consultant hematologist Dr. Majid Kazmi.

IF:           I realize that it’s early days yet, but how are you getting along so far?

JC:          As you say, it’s early yet. But my brain fog has improved and I can think more clearly and understand things more quickly. My constipation is not so bad and, before, when I would lie on the bed I could not move my right leg, as though it was dead; now I can lift it right up.

Delighted to have been given HSCT free

IF:           I know that the first three months are in ‘recovery’ mode and you cannot do any serious exercising yet, but are you happy with having been given HSCT free and your progress since?

JC:          Happy? More than happy, I’d say delighted with both. And the progress is not just me. I had my first follow-up last week and Dr. Kazmi was really pleased that I am, in his words, “ahead of the curve” and doing better than he thought I would. He was surprised and pleased that I have also started to drive again, something I had not done for months. My EDSS score is about the same but it’s too early to expect anything else yet.

IF:           What are your hopes and expectations about the final outcome of this treatment?

JC:          I am realistic about this. Stopping the MS getting worse, halting its progression is my primary goal. Anything better than that would be a great bonus. Of course, I am hopeful of that but stopping it is my main goal.

IF:           What’s next for you?

JC:          Dr. Kazmi, who is so caring, wants to see me again in another month. Then, once three months has passed, I can start some serious exercising.

IF:           Finally, James, what do you think of how you were treated by the team at King’s?

JC:          It was absolutely phenomenal. Not just Dr. Kazmi but the whole team. I cannot speak highly enough about them all.

 

1 Hematopoietic Stem Cell Transplant.

2 Access to NHS services is based on clinical need, not an individual’s ability to pay. NHS services are free of charge, with certain exceptions approved by Parliament.

This article was written by me and first appeared on Multiple Sclerosis News Today.

 

new strap

 

ian profileIan Franks is Chief Columnist and Patient Specialist at Multiple Sclerosis News Today. He has enjoyed a successful career as a journalist, from reporter to editor, in the print media; during which he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain and uses his skills to write his own flourishing specialist MS, Health & Disability blog at http://www.50shadesofsun.com. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

 

4 thoughts on “James Received HSCT Free, as He Lives in the UK

  1. This is great for those that can get treatment in the UK, but lots of people will get refused and still need to go overseas. It would be even better if HSCT was available to ANYONE with MS or other Autoimmune diseases. As it is, the treatment is still only given to a select few. You make it sound as if HSCT is available to anyone who chooses to have it.

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    • Hello Cheryl, I agree that HSCT should be available to all who need it but this article does point out that there is a panel that decides upon each application and that a criteria exists. It quotes James as saying: “All applications have to be considered by a panel which, first of all, in December, turned me down as not meeting the criteria. But I appealed with the support of my neurologist and new MRI evidence. At the next panel meeting at the end of January, my application was accepted.”

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  2. I completely agree with Cheryl…..although it does say about the panel, it is still misleading and gives the impression that if you jump through the right hoops you can get the treatment. This is not true for most MS sufferers wanting HSCT on the NHS, I can’t even get a referral to Kings from my neurologist because I don’t fit the criteria. There is a lot of bureaucracy surrounding actually getting HSCT in the UK. Perhaps you could expand this article to include criteria for this treatment in the UK. Russia for me as no hope on the NHS.

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    • Hi Nikki, as I put in the article, there is a criteria and a panel that assesses each application. You say, yourself, that you don’t fit the criteria. I do plan to write another article about the NHS criteria.

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